Saturday, January 8, 2011

If CBT and GET actually worked you would hear lots of stories from cured patients, but you don't

If Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) actually worked, you would hear lots of stories about cured patients. Can anyone remember having heard such stories? Do you know anyone who has been ‘cured’ by these methods?

Or are you still reading and hearing lots of stories about uncured, long-term patients?

The UK establishment is about to release something called the PACE study, which is their attempt to prove the efficacy of these therapies. The study is chronically over-budget and over-schedule, and has had to extend to seven centres instead of the planned 2 because they could not get enough patients to enrol or stay on the study. In desperation, it has also accepted patients without a proper diagnosis of ME/CFS according to any of the accepted international criteria, instead accepting those who simply complain of ‘being fatigued’ for other clinical and non-clinical reasons.

Scientifically, it’s a travesty, but the aim is political – to safeguard the investment of those who provide CBT/GET services to the UK’s NHS; to prevent members of UNUM (insurers) from having to pay out, and to remove as many patients from state benefits as possible.

Unlike the US, our media sold their souls to the last Government which set up the ‘UK Science Media Centre’ to vet all scientific announcements. The media has agreed only to print what the SMC tell them to, thus extinguishing any genuine journalistic enterprise. The person on the SMC responsible for ME/CFS is a psychiatrist. The same psychiatrist chairs the PACE study, and has significant financial interests in the companies providing CBT and GET services to the NHS.

So, as you can see, we are in a bit of a bind in terms of making any progress in this area, or getting any focus on it, and for this reason, I would like to thank David Tuller for his careful, balanced reporting, and the NY Times for syndicating the article so that it can be seen worldwide.

4 comments:

This seems like a very mean thing to say but I wish every unscrupulous medic involved in this farce would get M.E (the real thing), have their lives changed irrevocably, as we all have. Then they might sit up and listen.

I think part of the solution is to prosecute crimes against humanity in the visible heads that have obscured the severity of this condition. As the evidence is amply demonstrated, and there are numerous witnesses and evidence ,..., and millions of victims (many now deceased, and others by falling or contaminated) by the delay in investigations, these enemies of humanity must be duly punished.

If you can inject XMRV a monkey, then these primates unsympathetic, greedy and merciless that have profited and withheld information regardless of the suffering of millions of people, must be the missing link between macaques and humans for progress of research.

Its entities are to be used for all types of drug testing next generation by the WPI and related laboratories. In case of death must be donated to science for the complete dissection of their bodies in order to find more evidence.

Unlike them and as a compassionate, I suggest that aside from the good treatment accorded them in secure laboratories, be assigned a professional psychologist take many years to frentre of an association of patients with FM / CFS / MCS, or autism or various types of cancer, and will have opportunity to have contact with mercy, while serving in something useful to the community.

Someone may be shocked at discharge in these lines, but I urge you to think in terms of proportionality, the balance is tilted sobradamerte. Of us, citizens, to ensure that these instruments be used as little as possible.

If anyone doubts that this is an unequal war without quarter and without honor codes, the reality will finish prostrating to that evidence.

A statement issued by Chris Clark (then CEO of Action for M.E. who held a seat on the PACE Trial committee between 2004 and 2006)in April 2004 identified the names of the six centres:

"Six specialist clinics in England and Scotland, over 4 years. [Edinburgh, Oxford, St Bartholomew's X 2, Kings College Hospital and the Royal Free hospital]..."

In May 2004, the ME Association issued a position statement on the PACE Trial in which they state that:

"The PACE trial will be led by Dr Peter White (Saint Bartholomew's Hospital, London), Professor Michael Sharpe (University of Edinburgh), and Professor Trudie Chalder (King's College Hospital, London) - all of whom work in the area of either psychiatry or psychological medicine.

"600 patients will be recruited from six different specialist ME/CFS clinical centres across the UK. These are situated in Edinburgh, Oxford and London (Saint Bartholomew's Hospital x2, King's College Hospital, Royal Free Hospital)."

So it was known since early 2004 that at some point, six centres would be involved in recruiting participants and also the names of these centres and lead clinicians.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.